Sunday, May 15, 2011

Say It Ain't So

Having purchased this book twice in two separate editions,  both have completely disappeared from this house. It was recommended to me immediately upon WB's diagnosis and probably prematurely. People can tell you what happens with AD patients, but you really do not realize it in it's entirety until you're living it or living with it. Unfortunately, Alzheimer's begins to define everything in your life and in the lives of everyone watching as it completely takes over.

Having never recommended The 36-Hour Day to friends and family before, now's your chance to pick up a used copy somewhere. It really does not matter which edition, the scope is the same.

Believing we can find humor to deflect reality is just my style so naturally I have been putting off the inevitable as if saying it out loud or writing it down would make it a more reliable statement of fact.

I picked up 'say it ain't so' from a friend of mine many years ago. After some remarkable comment,  she would always reply, "Say it ain't so" and I would laugh out loud. Now, I fear that saying it out loud will make it so, therefore I have been putting off having this conversation with myself , much less others. To write it must mean it is so, so here we go.....

WB's condition has taken another dive over the last couple of months. Normally, I do not recognize subtle day to day changes, but lately they have been overall significant.

Speech for him has been troublesome and for the last several years he has communicated in questions.

Up until just recently we could figure it out, read his mind or finish his sentences. With very limited two-way conversations these days, I am  keeping my sentences short and am presenting my questions to him that allow one word answers. The Alzheimer's is definitely damaging the pathways in his brain, now, making it difficult for WB to find the right words and to understand what we are saying. He regularly substitutes words for others and invents entirely new words altogether.

For a long while, WB would have days where he would call his friends from his cell phone to chat about this and that. The pattern is, he will call them and try to get a few words in and then hand the phone to me. His last call to one friend ended in great frustration. Recently, more frustrating for the friend than for WB when he shouted at me, "Rhonda, I just cannot understand what Billy Ray is saying!" Most days, I try and hide the phone.

Reminded by a friend of mine that it is some days like communicating with a toddler. Do not tell him we are going to do something or that we are expecting someone too soon or you will be queried on it non-stop until it happens.

I also remember being able to tell him to slow down and it will come. Now, it doesn't come at all.

At home, the girls and I are constantly transitioning to accommodate, and the car leaves the garage less and less. He seems content to loiter around shuffling his feet waiting on his next meal or snack. Where he would once watch a hunting and fishing show for hours, there is less interest and this must be that he is no longer processing it. 

Sitting down in the basement garage in front of the fan is something he has always enjoyed and it just hit me recently when going through old family photos that it was something his mother and daddy did as well. Finding his new respite on the back porch, I realize he is wanting to venture out, but is  still staying even closer to the back door.

That said, we will work next week on making the back porch more accommodating for him.  Existing furniture moved out, and something more comfortable moved in, perhaps fans and a new umbrella. Whatever it takes. We have already moved the bird bath out back and the new bird feeder is ready to hang.

WB is now living the 36-hour day ~ so we are going to just settle in and live it with him for awhile.

My name is Rhonda Brantley and my husband, Billy Ray Brantley. suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

1 comment:

  1. I am looking forward to a nice long visit with WB on his porch!
    PS I will add this book to my shopping list! Thanks!


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